Most of us take steps to
improve and maintain our
health. Our beliefs about
health can lead to far-reaching
behaviors that may create a more holistic
health lifestyle, but sometimes we
choose individual health practices that
make us feel better now or that we think
will help us feel better down the road.
Sometimes, these behaviors are guided by
conventional health care providers, such
as physicians, pharmacists, and chiropractors.
Sometimes providers recommend
these approaches based on medical
knowledge or research we don't know
about. Often, such practices become
accepted as common sense and are largely
taken for granted as the things everyone
should do.

But sometimes we seek care from practitioners
of complementary and alternative
medicine (CAM) who are not part
of the conventional health care system.
And sometimes we take care of ourselves
with limited or no input from any type of
health care provider at all. Such self-care
might come from folk or family remedies,
or from something we heard on the news,
from a friend, or on the internet. Taking
action to improve our health feels right,
even when we don't have evidence that
what we are doing will work. Belief and
science don't always align, but when it
comes to our own health and well-being,
who said they had to?

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People with HIV need to be vigilant
about maintaining their health. In addition
to standard HIV treatment, many
use CAM to deal with HIV-related symptoms,
treatment side effects, pain, and to
improve their quality of life. Although
estimates vary, two reviews of a range of
studies concluded that 60% of people with
HIV use CAM. Given that large number,
it is useful to ask what CAM is, who uses it
and why, how well its use is integrated into
conventional medical care, and if there are
risks we need to be concerned about?

What is CAM?

The National Center for Complementary
and Alternative Medicine (NCCAM) defines
CAM as a group of diverse medical and
health care systems, practices, and products that are not considered part of conventional
medicine. It defines complementary care as
CAM use in conjunction with conventional
medical care, while alternative care is defined
as CAM use in place of conventional care.
Generally, complementary care is much more
common than alternative care, which studies
suggest is now quite rare. Integrative care
refers to the combined use of conventional
medical care and CAM for which there is
evidence of safety and effectiveness.

A broad range of activities and practices
may be considered CAM. The
NCCAM distinguishes four distinct
domains of CAM:

Biologically-based practices

Manipulative and body-based practices

Mind-body practices

Alternative medical systems

Biologically-based practices, which
are the most commonly used, include
the use of herbal products and dietary
supplements, such as high doses
of vitamin C or other vitamins, herbal
or mineral supplements, probiotics,
teas, and supplements like garlic.
For persons living with some chronic
diseases, including people with HIV,
marijuana use to manage weight loss,
nausea, and pain is relatively common.
Manipulative and body-based practices
that often have stress-reducing
effects include massage therapy,
manipulation, and other bodywork.
Mind-body practices that reduce stress
and enhance feelings of well-being
include meditation, prayer, hypnosis,
and yoga. Alternative medical systems
include naturopathy, acupuncture, and
homoeopathy. Some types of CAM are
more likely to be provided by a CAM
practitioner, while others are more
likely to be used as a form of self-care.

Who Uses CAM?

CAM is widespread among Americans
in general, and people with HIV in particular.
One recent national study estimated
that 38% of Americans had used
CAM within the past year, and many
more had used CAM at some point in
their lives. Rates of use were highest
among those aged 50-59 (44%). CAM
use among people with HIV is higher
than it is among Americans overall --
about 60%.

Among people with HIV, CAM use
is particularly high among men who
have sex with men, non-minorities,
those with higher education, and those
with higher incomes. People with
AIDS, those living with HIV longer,
and those with more HIV-related symptoms
are also more likely to use CAM.
Some evidence indicates that people who
seek social support, engage in problemfocused
coping, and use positive reinterpretation
(finding the best in a bad
situation), are more likely to use CAM.
Such coping strategies might promote
well-being and contribute to the oftenobserved
beneficial association between
higher levels of CAM use and lower levels
of depression, psychological distress,
and mental health problems.

Self-Care vs. Integration

In the early years of the HIV epidemic
in the U.S., when there were few effective
therapies and people were literally fighting
for the lives, there was a widespread
belief that "you have to be your own doctor."
In those years, building on social,
cultural, and family practices that were
in place before the HIV epidemic, many
people advocated for HIV self-care that
often involved the use of CAM. As better
HIV treatments have become available,
many people have continued using
CAM in conjunction with conventional
treatment. Most of the evidence shows
that only a very small minority use CAM
as an alternative to standard HIV therapy,
so it is important to consider how
often and how well conventional care
and CAM are integrated.

It has been suggested that the
response of the medical profession to
CAM has shifted from condemnation
to reevaluation, integration, and, perhaps,
cooperation. But evidence from
the 2007 National Health Interview
Survey (NHIS) suggests that we might
not have traveled as far down the path
of integration as needed. That study
found that only 42% of all Americans
disclosed their CAM use to their
physician.

In studies of people with HIV,
disclosure of CAM use ranges from
38% to 90%. We do not know, however,
what people with HIV discuss
with their health care providers or the
extent to which holistic, coordinated care is accessible. Based on how often
Americans generally discuss their
CAM use with their physicians, we can
presume that such coordination is not
generally available. Integrative care, as
defined by the NCCAM, is limited by
the fact that people often do not discuss
CAM with their health care providers
for a variety of reasons. Also,
conventional and CAM practitioners
often do not coordinate care, and there
is limited research on the safety and
effectiveness of commonly used CAM
therapies.

Adverse Effects

In a chronic disease like HIV, health practitioners
often consider a broad range of
behaviors to be CAM. Conventional providers
are likely to pay more attention
to some forms of CAM than to others
because some have the potential to undermine
other treatments. Concern about
whether particular forms of biologicallybased
CAM undermine HIV treatment
echoes throughout the research literature,
even though limited evidence on adverse
effects currently exists.

In one national study from 1997,
approximately 26% of persons in conventional
care for HIV were using CAM
that had the potential for adverse effects.
The NCCAM includes some warnings on
its website that are relevant to HIV care.
For example, they report that garlic supplements
sharply reduced blood levels of
Invirase, and that St. John's wort could
significantly lower the effectiveness of
Crixivan. St. John's wort probably also
changes the blood levels of other drugs
that are broken down by the liver, such
as Sustiva, Reyataz, and Kaletra. Many
people with HIV may be using CAM
treatments that interact with the medications
they are taking. It's very important
that people discuss their CAM use with
their doctors, and providers need to make
greater efforts to integrate conventional
care and CAM.

CAM in Older Adults

It is estimated that by 2015, 50% of
people with HIV in the U.S. will be over
50. As more people are aging with HIV,
they are encountering the chronic health
conditions that become more common
at older ages. As a result, they are
experiencing more complicated medication
regimens. With increasing numbers
of medications, the potential for interactions
among conventional and CAM
treatments increases.

Recognizing this potential, the
American Association of Retired Persons
(AARP) and the NCCAM teamed up in
2010 to examine CAM use among adults
over 50. They found that 53% of older
adults had used CAM and 47% had used
it in the past year. Use of herbal and dietary
products, which are most concerning from the standpoint of adverse effects,
was the most common type of CAM
reported (37%). Among those who had
ever used CAM, 78% were using at least
one prescription medication at the time
of the survey, while 37% were using four
or more medications. Among all older
adults, 33% had talked with any health
care provider about CAM. Among CAM
users, that rate almost doubled to 58%.
People who discussed CAM with a health
care provider were more likely to talk
about it with their physician than with
any other type of provider, and they were
much more likely than the health care
provider to bring up the topic.

Among those who talked about CAM
with a health care provider, the conversation
focused on:

Interactions between CAM and other
medications (44%)

Whether to start CAM (41%)

The effectiveness of CAM (41%)

What to use (40%)

The safety of CAM (38%)

Where to get more information about
CAM (28%)

Referrals to CAM providers (21%)

Among individuals who did not talk
with their health care provider about
CAM, a variety of reasons were cited:

Health care provider never asked (42%)

Didn't know they should (30%)

Not enough time during the doctor
visit (17%)

Didn't think the health care provider
knew about CAM (16%)

Thought the provider would be dismissive
or tell them not to use CAM (12%)

Didn't feel comfortable talking with
the provider about CAM (11%)

Researchers from Syracuse University
and ACRIA used data from ACRIA's
Research on Older Adults with HIV
(ROAH) study to examine CAM use
among people with HIV who were over
50. ROAH found that 28.8% of the sample
reported CAM use, including:

13.9% using body-based CAM (such as
massage or Reiki)

16.0% using mind/body-based CAM
(such as acupuncture, yoga, or prayer)

11.7% using biologically-based CAM
(such as herbs, supplements, or
vitamins)

Consistent with prior research, whites
and people with higher education, higher
incomes, higher levels of pain, and lower
levels of depressive symptoms were more
likely to use CAM.

Among those who used CAM:

55.3% used some body-based CAM

63.2% used mind/body-based CAM

45.6% used biologically-based CAM

Among CAM users, use of body-based
CAM was higher among women,
LGBT people, and those taking HIV
medications. Use of mind/body-based
CAM was higher among LGBT people,
those who felt they were in worse
health, and those who were not taking
HIV medications. Finally, use of
biologically-based CAM was higher
among non-LGBT people, whites,
Hispanics, employed persons, people
on Medicare, and people not taking
HIV medications. These complex patterns
reflect the diverse social and cultural
influences on CAM use, as well
as the fact that some individuals use
CAM to enhance existing health and
well-being while others use CAM to
manage pain, symptoms, and the side
effects of treatment.

The Future of CAM in HIV Care

The high levels of CAM use among
people with HIV are likely to continue,
and many CAM health behaviors most
likely pose no risks. They are practices
that can reduce stress, build fitness,
and promote well-being. It is not
clear that they need to be considered
"medicine." Stress reduction may
affect immune function, but these
practices are part of a healthy lifestyle
and need not be medicalized.

High levels of CAM
use among people
with HIV are likely
to continue, and
many CAM health
behaviors most likely
pose no risks. They
are practices that can
reduce stress, build
fitness, and promote
well-being.

However, some forms of biologically-based
CAM may pose risks of drug interactions
that could undermine health.
More research is needed to determine
which of these are safe and effective and
which are not. More efforts need to be
made to make sure that state-of-the-science
information about the safety and
efficacy of CAM is available to people
with HIV. Health care providers must
start conversations about CAM and be
able to answer questions about it.

The NCCAM defines integrative
care as the combined use of conventional
medical care and CAM for
which there is evidence of safety and
effectiveness. This is a worthy goal to
pursue for the sake of holistic health
and well-being.

Andrew S. London is Chair and Professor
of Sociology, and Co-Director of LGBT
Studies, at Syracuse University.

This article was provided by ACRIA and GMHC. It is a part of the publication Achieve.
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